OH poor misguided me...

[eidsvold]

Just read this article dh emailed to me..

very interesting reading - especially the part that says I am misguded...

this

Didnt read it all and dont know your history why are you misguided?

I just read it, eidsvold. What utter s*e! Where does this selection process begin and end? Who is perfect in every way? Someone could be physically perfect and turn out to be a psychopath.

Of course you are not misguided.

respect you so much eidsvold BTW I dont know whether I have mentioned this before but I did have to have genetic couselling(sp?) because my sister had cystic fibrosis (CF) I was not a carrier but I still went on to have an SN child - something completely different !! Love them both all the same

Very interesting article BTW and sorry to waffle

John Harris needs to be shot. Poor misguided mother of his bringing him into the world.

Only skim read so far so will rant more later..... Have to go and do BIBIC with ds1 now, how misguided I'm sure there's an institution somewhere I coud have dumped him in.

I am certainly not misguided. Having a child with SN has brought so much joy (heartache aswell)at the little acheivements he can do.
That article has really upset me.It must of upset others on here too!!!
I always remember the saying "what goes around comes around"

from the link:

Eugenics is a term that John Harris, a bioethicist at Manchester University is also prepared to use, but sees this as a laudable aim.
"Eugenics is the attempt to create fine healthy children and that's everyone's ambition."
He believes couples who choose to have babies even when there are problems are "misguided" and the more we can screen out disability, pain and suffering the better.
"We're not trying to do this through killing people or eliminating individuals, we're trying to do this by making choices about which people will exist in the future."

1)Why does disability have to equal pain and suffering? eg mirror article
2)If he's not doing it through killing people or eliminating individuals how exactly is he doing it?

Glad that someone has recognised the pressure to terminate culture. I've heard some horror stories.

Oh no!! Going to Man uni tommorow and feel like hunting him down.

Its all a bit Brave New world

One of the best things about the baby programmes on Discovery Health recently has been seeing babies with, eg, spina bifida and external organs, being born (v carefully in the case of the SB one I saw in order not to rupture the "blister" - sorry, don't know proper word - over the opening) and then operated on, fairly successfully.

Conditions like that are feared as much from ignorance as anything - I know my image of SB was much worse than what I saw on that programme.

On the other hand the consequences of any abnormality can vary so hugely...Have you all followed Rhubarb's link to the piece about terminations being encouraged? I didn't read the whole thing but the one that stays with me is about the child (Rachel?) with what amounts to no brain at all (although she must have something to stay alive?) Her mother said something like, her existence justifies her existence, people just love her, but I can't help thinking that she must need such intensive care that any other child in the family with her would be effectively ignored...on the other hand the girls in Jimjams' friend Jacqui's family kind of take a back seat, but they are such lovely people you can see the benefits of being part of a family like that...

You have to draw a line somewhere but who decides where to draw it?

(Sorry if that offends any of you, not intended to.)

Rhubarb's link is here ("amnio article" ) and in fact suedonim has done a link to eidsvold's BBC piece on the same thread.

There's an article on the BBC website and an upcoming radio programme on this subject soon, which sounds interesting.

Oops, duplicated Eidsvold's site, which I thought was the one Rhubarb put up earlier! I just can't cope with more than two screens open at once!

I read it janh and it has brought tears to my eyes, especially the comments by Joyce Arthur.
When my ds was born, no-one had any idea he would be so severly disabled.There is nothing wrong with his genes or chromosones.
I find it disgusting that in this "modern age" this barbaric behaviour is still going on.It reminds me of the nazi regime.

If the so called academics can make assumptions regarding disabled people IMO they are disabled themselves because they lack feelings, compassion and the fact that no-one is perfect.They need to be out in the real world, amongst real people and problems instead of sitting in laboratories and reading bleedin data and statistics.
Sorry for the rant but I am angry.

Rhubarb's amnio article is shocking......
I've said it so many times. Joe public considers diasbled children (and adults I guess) to be less human than "normal" kids.

I think when you come to condtions such as anencephaly and trisomy 18 or trisomy 13 decisions become very very tricky. I just wish that they would stop portraying DS as being a severe disability full of pain and suffering. It's ridiculous.

Janh- have to disagree about the jax's girls. They took a back seat in the tv programme but not in real life. Its interesting I worried about ds2 not getting as much attention as ds1, but to be honest I have to watch that the opposite doesn't happen. Being normal ds2 is incredibly good at demanding attention. I have to watch that ds1 doesn't lose out. (I do take your point about the very serious disabilities but if SS would do their job there isn't any need for the siblings etc to suffer).

I agree you may have to draw the line somewhere (actually you don't, but I can see why that could be good thing), but its difficult for confused pregnant hormonal mums to make any sort of decision if the doctors are all assuming you'll terminate and telling you you're irresponsible if you don't. We've done this one before, but maybe more counselling BEFORE testing.

doormat - half of them have AS so if they brought in a prenatal test for autism they'd be arguing to terminate themselves

I realise that this is a very sensitive subject, but I am interested in your collective opinions. How do you feel about the pre implantation screening for conditions like CF, sickle cell etc? Ie the parents have IVF and a cell from the 8 cell embryo is removed and tested prior to implantation. I'll fully understand if people don't want to give opinions. I'm interested as I have just had to teach the ethics of genetic testing to a group of 16 year olds.

Do people think it is always wrong to terminate a DS pg? Someone I knew had a baby with Downs, her second child. She then became pg again and was adamant she'd terminate if tests showed DS. She'd BTDT, GTTS, so it can't be said that she was ignorant about DS, but her experience was pretty awful, not at all like the mums of children with DS who write here. As it was, tests showed the new baby didn't have DS.

It also has to be said that HP's are very good at making assumptions about all sorts of things. I have a friend who is expecting an IVF baby. When she went to the booking clinic the midwife informed her that she wouldn't be wanting any testing as hers is an IVF pregnancy. As it happens, my friend does want tests! It's outrageous, the way people jump to such conclusions.

suedonim, sorry but could you please translate "She'd BTDT, GTTS"?

I've tried but am completely flummoxed.

Been there done that got the T shirt

hmb_ I do think pre-implantation testing is different from termination tbh. But this is where it all gets a bit shaky I guess. Where is the line drawn on pre-implantation testing?

I thank god there is no genetic testing for autism yet. Life without ds1 - ugh makes me shiver to think about it. I'd be a very different person as well (for starters I'd be telling you all to stop being so ridiculous and go and get your MMR now please Maybe not.....).

For the medical ethical stuff I used to use cochlear implants and deaf culture...... Not genetic but interesting discussions......

suedonim -just interested- why was the experience awful for your friend with a child with DS?

Thank you, Soupie (durrr!)

forestfly - I am one of those parents who knowingly bought a 'disabled' child into the world - had a very serious heart condition and ds.

However we did have a very good cardiologist who offered us an amnio when the heart defect was confirmed and I was ready to fight for my right to say no - and when I said no - it would not make a difference to the outcome. No pressure - he said nothing. However I think the fact I was very aware of what was going on and the implications of tests etc made it easier for me.

Dh agress with you Janstar re: perfect babe - turns into a sociopath/pyschopath.

There are a number of families I have met with a child with ds - who was the first born. each of them have gone on to have children without ds. I have not come across a family where the second or subsequent child had ds even though there is a greater risk. ( having said that - my experience is not vast )

Have not been able to read the whole article from Rhubarb's link - found it hard to get past the part about injecting poison into a baby's heart. Have saved it to digest in small amounts.

Now I am not only misguided but I am a sinner.....

From rhubarb's article....

'Dr. Robert Edwards, who worked with Prof. Patrick Steptoe on the world?s first IVF baby, Louise Brown, who was born in 1978, has said it will soon be ?a sin? for parents to give birth to a disabled child'

What about some twins I know - they were born healthy and 'perfect' had a serious reaction to vaccinations and now are disabled. Do we give them back and say sorry I wanted 'perfect' babies.

I just wonder where we draw the line.

Oh and I want to slap Joyce Arthur's - now I am abusing my child because I let her be born.....